More than a neighbor

March 04, 2003|By Scott Shane

WHEN Mr. Rogers came to Baltimore 16 years ago to visit a little girl in a coma, he insisted on one thing only: There would be no publicity.

In defiance of all the rules of modern American celebrity, he wanted no touching television footage, no hamming it up for the newspaper photographers, no media throngs trailing him through the corridors of Johns Hopkins Hospital.

It would be just Fred Rogers, the troupe of puppets he carried in a clarinet case and 7-year-old Beth Usher.

Beth had a rare disorder called Rasmussen's encephalitis that by 1986 was assaulting her with 50 to 100 seizures a day, interfering with school, play and development. Her parents, Brian and Kathy Usher of Storrs, Conn., noticed one peculiar phenomenon: When she sat down each morning to watch Mister Rogers' Neighborhood, the seizures stayed away.

"She was so calmed by his voice," says Kathy Usher. "It was the only time of day that she would not have a seizure."

After a frantic hunt for the cause of their daughter's illness, the Ushers reluctantly agreed to what doctors said was the only way to prevent her total disability or death: a risky, preposterously radical operation called hemispherectomy, the surgical removal of one of the brain's two hemispheres. A child's brain is flexible enough to reprogram itself, with the remaining hemisphere taking over the functions of the excised half.

A week before surgery was scheduled, with the presumption of a desperate parent, Ms. Usher telephoned Fred Rogers' Pittsburgh studios and explained Beth's situation to an assistant. That night, Mr. Rogers called the Ushers' home and spoke with Beth for more than an hour, alternating between his own voice and those of his characters: King Friday, Lady Elaine Fairchilde and Daniel Striped Tiger.

The Ushers eavesdropped in the next room, amazed by what they were hearing.

"She told him her fears about the surgery - actually she was telling King Friday," Ms. Usher recalls. "She told him all kinds of things she'd never told us. She was always very protective of us."

In a grueling 10-hour operation at Hopkins on Feb. 4, 1987, Dr. Ben Carson removed the left hemisphere of Beth's brain. Afterward she slipped into a deep coma.

For many days it appeared she might not survive. Her parents camped at her bedside. To cover the beeping and buzzing of the life-support machinery, they played the tapes Mr. Rogers had sent her, hoping his voice would comfort her.

Mr. Rogers had called regularly to follow the girl's rocky course. About two weeks after Beth's surgery, he announced he was coming for a visit. He told Hopkins officials he wanted absolutely no media; when he learned that I had been following Beth and her family since before her surgery, he agreed to speak with me briefly on the condition that nothing be printed except in my series of articles on her case.

A friend met him at Baltimore-Washington International Airport and drove him to the hospital, where he went straight to Beth's room. For about 20 minutes, he was alone with her, talking quietly and introducing her to his puppets. Then he invited her family in, suggesting they take photos to show her when she regained consciousness.

I caught him in the lobby, where he briskly but cordially answered a few questions. The cynical reporter in me wondered if Mr. Rogers had an angle I was missing. He didn't, I decided. The self-effacing presence my daughter watched on TV was the real thing.

"It was a real treat for me to talk with her - she's such an imaginative child," he said. "My plane was late today, so I only had an hour with her."

The friend who had driven him into town wondered: "You get 1,000 requests a year like this. Why are you doing this?"

"This wasn't a request," Mr. Rogers replied. "It was just something I had to do. I just had a hunch I ought to come."

He kept in touch as Beth emerged from the coma and endured months of painful therapy, teaching her brain's right hemisphere to control talking and walking.

Mr. Rogers continued to check in with Beth as she grew into a caring, intuitive young woman with a remarkable sense of humor. Her slight limp was the only obvious sign of her extraordinary surgery. Perhaps inspired by her older friend, she wrote a tender, mischievous booklet of advice for kids going into the hospital.

Mr. Rogers would send Beth letters in handsome handwriting. He often called on her birthday.

In 1991, Mr. Rogers accepted an invitation to be graduation speaker at the University of Connecticut, where the Ushers are administrators. Between official appearances, he spent about two hours walking and talking with Beth, then 11.

And when Beth, now 23, took a job as a teacher's aide for a kindergarten class at her old elementary school in Storrs, Conn., she told the kids all about her friendship with Mr. Rogers. They would send him cards and drawings, and he always replied with a letter to the class.

Recently Beth handed out a worksheet for the kids to draw something explaining "Why I Am Special." The plan was to send it to Mr. Rogers when he was to turn 75 on March 20.

When the news came last week that Mr. Rogers had died of stomach cancer, "it was like a death in the family," says Ms. Usher. Beth grieved silently for a while. Then she got out some memorabilia of her friendship and read over an account of that 1987 visit, when a famous man came and spent time talking to a little girl who couldn't answer, except with the rest of her life.

Scott Shane is a reporter for The Sun. His three-part series about Beth Usher's surgery was published in March 1987.